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Patient experience of cancer treatment in NSW

Enabling people to give feedback about their cancer experience can lead to more personal care being provided. This can improve the quality of the health system and assist in focusing on aspects of concern to patients.

The Cancer Institute NSW has partnered with the NSW Bureau of Health Information to report on the experiences of people with cancer in NSW. People who attended outpatient cancer clinics across NSW in November 2016 were surveyed, and asked for feedback about their experiences and outcomes of care. The psychological wellbeing of patients was also assessed.

People attend outpatient cancer clinics for a range of reasons. The results shown look at those people that reported they had cancer and were being treated for cancer at the time.

Overall key findings: Cancer patient experience in NSW

In November 2016:

almost 12,000 people attending outpatient cancer clinics (96%) felt they were ‘always’ treated with respect and dignity

more than 10,000 people (85%) reported a ‘very good’ overall rating of care received

55% of relevant people surveyed were advised by a health professional at an outpatient cancer clinic to quit smoking.

Function* of patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD (ranked), November 2016

Key finding

In 2016, 80% of surveyed people being treated for cancer in an outpatient cancer clinic in NSW public hospitals reported they were either ‘able to be up and about with fairly normal activities’ (58%) or ‘able to carry out normal activities with no limitations’ (22%).

Note: The ‘daily function’ of people with cancer can be measured by the Eastern Cooperative Oncology Group Performance Status Scale (ECOG).21 This scale looks at a person’s level of function in terms of activities of daily living, such as ability of self-care and physical ability.

N = Number of eligible responses to question.

*Based on the Eastern Cooperative Oncology Group Performance Status Scale. Patients needed to have or had cancer to be eligible to respond to this question.

Self-assessed symptom scores* for patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD, November 2016

Key finding

The Edmonton Symptom Assessment System (ESAS) scale measures the severity of nine common symptoms that may be experienced by patients with cancer.22Tiredness and poor general wellbeing were the symptoms rated highest among people attending outpatient cancer clinics in NSW public hospitals in 2016.

Self-efficacy scores* for patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD, November 2016

Key finding

The Communication and Attitudinal Self-Efficacy (CASE) scale measures a patient’s confidence and ability to engage in their care.23 On average, high scores were achieved across NSW for each category of the scale for people undergoing an active phase of cancer treatment in November 2016. This suggests outpatients had a high level of confidence regarding their cancer care.

* Communication and Attitudinal Self-Efficacy Scale (CASE-cancer). Twelve questions are answered on a four-category response scale. These have been scored linearly and aggregated to give means for the three domains: Seek and obtain information; maintain a positive attitude; and understand and participate in care.

Psycho-oncology in cancer care

Having cancer can affect people in many ways. The psychological impact of cancer can affect a person’s overall functioning, quality of life and capacity to cope. The field of psycho-oncology considers the psychological, social and behavioural aspects of cancer.

Assessing psychological symptoms can help to identify patients' concerns, levels of distress and the severity of symptoms. This can allow health professionals to provide support at an early stage.

People who attended outpatient cancer clinics across NSW in November 2016 were surveyed, and asked for feedback about their experiences and outcomes of care. People having treatment for cancer were asked to rate:

their levels of anxiety and/or depression

how confident they felt about their ability (self-efficacy) to keep a positive attitude or control negative feelings.

Identifying differences in the experiences of patients across NSW may help to target efforts to address the psychological problems associated with cancer.

Self-assessed rating of anxiety* for patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD (ranked), November 2016

Key finding

In 2016, 29% of people attending outpatient cancer clinics in NSW public hospitals reported moderate or high severity for anxiety. There were some differences in results between NSW local health districts (LHDs).

N = Number of eligible responses to question.

* Edmonton Symptom Assessment System (ESAS). The respondents' response to the anxiety item, rated on a 10-point numerical scale of severity, was collapsed into four categories for this chart.

Self-assessed rating of depression* for patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD (ranked), November 2016

Key finding

In 2016, 27% of people attending outpatient cancer clinics in NSW public hospitals reported moderate or high severity for depression. There were some differences in results between NSW local health districts (LHDs).

N= Number of eligible responses to question.

* Edmonton Symptom Assessment System (ESAS). The respondents' response to the anxiety item, rated on a 10-point numerical scale of severity, was collapsed into four categories for this chart.

Self-efficacy regarding keeping a positive attitude*, patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD (ranked), November 2016

Key finding

In 2016, the majority of people who attended an outpatient cancer clinic in NSW public hospitals felt they had some degree of confidence in their ability to keep a positive attitude. There were some differences in results between NSW local health districts (LHDs).

N= Number of eligible responses to question.

* Individual item from Communication and Attitudinal Self-Efficacy Scale (CASE-cancer): "It is easy for me to keep a positive attitude", answered on a four-category response scale.

Self-efficacy regarding controlling negative feelings*, patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by LHD (ranked), November 2016

Key finding

In 2016, the majority of people who attended an outpatient cancer clinic in NSW public hospitals felt they had some degree of confidence in their ability to control negative feelings. There were some differences in results between NSW local health districts (LHDs).

N = Number of eligible responses to question.

* Individual item from Communication and Attitudinal Self-Efficacy Scale (CASE-cancer): "I am confident that I can control my negative feelings about cancer", answered on a four-category response scale.

Why are different time periods and dates reported?

Cancer information is collected from many places, so it takes time to review and analyse it. Different pieces of information may be collected over different time periods, or reported at different times. This means that not all of the measures reported here have the same dates.

The information presented is the most recent available for each measure at the time the report was developed.